|
Hello and welcome to Jeremy's page
it's here where you'll get to know
All about this wonderful guy
and the journey he undergoes
He fights his battles everyday
not like just on a movie screen
He's sure a hero in our eyes
one of the bravest that we've seen
Long hard days and even harder nights
don't seem to get our Jeremy down
He just picks up his battle armor
and an awesome warrior can be found
Sometimes when Jeremy gets tired
and maybe a just little bit down
He looks back and thinks "yes I can"
and that fighting spirit again rebounds
We are glad you stopped by to visit
a true hero who is now your friend
Please leave your prayers and comments
after visiting Jeremy's page to the end
Copyright ©2007 Island Princess
Welcome To Jeremy's Webpage! It has been created to keep family and friends updated about Jeremy's on going battle with a Mitochondrial Disorder called MNGIE. ( Mitochondrial Intestinal Neurogastric Encephalopathy. Jeremy has gone through a lot in his life, he is currently fed TPN through an IV catheter that is inserted into his chest and into the heart, this provides all of the nutrition that jeremy needs on a daily basis, he also receives IV fluids and Fentynol through a PCA pump. He is on two liters of oxygen through out the day and on numerous other medications just to get by on a daily basis. It is hard to believe this when I see jeremy because he is such a fighter. So we are going to live on faith and hope and prayers that he fights this battle. As a family we are going to keep on pushing and fighting. Jeremy is one heck of a STORMTROOPER, he has made it through things that we never thought he would, so as long is there is one ounce of hope in us we are going to keep on pushing. Please sign the guestbook so that we know that you stopped by. To learn about Mitochondrial disorders please visit www.UMDF.org
Jeremy is showing signs of getting weaker with his lungs and being more and more tired throughout the day, but we manage to ge through just like before.
Many nights we pray with no proof that anyone could hear, and our hearts a hopeful song we barely understand.Now we are not afraid, although we know theres much to fear. We were moving mountains long before we knew we could. There can be miracles when you BELIEVE, though hope is frail, it's hard to kill. In this time of fear when prayers so often proove in vain, Hope seems like the summer birds, too swiftly blown away. Now I'm standing here, my hearts so full I can't explain, Seeking faith and speaking words I never thought I'd say. So remember there can be MIRACLES when you BELIEVE. Miracles don't always happen when you ask, and it's easy to give in to your fear. But when you are blinded by your pain and you can't see your way safe through the rain, thought of a still resillient voice says, love is very nearLife is not a race, Do take it slower, hear the music, before the song is over.
 
Thinking to myself I wonder,
Why do I get sick?
Is it my fault,
Or is chance the culprit?
Chance it is, I believe,
But it is courage to accept
The limits, the meds, the treatments
And to act upon them.
Difference confuses me.
My illness marks me as different
Yet my heart beats as does yours
I laugh, I cry, I learn like you.
I wish you could see as I do
That the important things about me
Are not unlike the important things about you.
Compassion, humor, curiosity, wonder
They are what make me the me that
Wants to get to know the you
that beats beneath your surface.
I hope that we will like one another.
Why ever not
COMING SOON
STAR WARS MEDLEY
Journal
Monday, November 24, 2014 11:45 AM CST By Missy Willis - 2 days ago
as of Monday jeremy had been having some issues with his oxygen saturations and his heart rate, wasn't sure if he was trying to get pneumonia or what was going on. Took him to PHP on Tuesday and they did chest X-ray to rule out pneumonia, but his heart was enlarged more than before, so we are holding his heart medication for now because his heart rate has been in the 50's which is in no way normal for jeremy.
Went to pulmonology yesterday and the adjusted his vent settings to a higher setting to see if this helped and last night was the first time on the new settings and he did seem to get a better nights sleep, at least that is a step in the right direction. They started him on Cipro, we are going to try and alternate between the Cipro and the TOBI two weeks on and two weeks off and see if this helps, because he seems to be getting the pseudomonas and seratia even while on TOBI.
Co2 levels are really high and right now they are thinking respiratory acidosis, hoping this isn't the case, we will be having an arterial blood gas on Monday to check the levels again.
Feeding formulas are getting changed as well, trying to find something that is very low in sugars and fat calories, as we are having some higher than normal blood sugar levels, and the weight gain is putting way too much on his heart. As soon as we get some more test results in such as cultures and xray reports in I will update some more, we will be doing a chest CT next week as well if we are not getting any where here with the test they have already done...
Read Journal History
Hospital Information: Patient Room: **Home**
Colorado
Links: www.umdf.org Info about Mitochondrial Diseases
www.oley.org Great source of information
|
|
